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    That's 2015 Kate's blog reporting the presentation of Dalton Dietrich:

    He’s from the Miami Project, which has a mission to discover and test new therapies that will improve function and quality of life issues in people living with paralysis. It used to be all about sci, but has expanded to include paralysis with other causes (stroke, ms, etc)
    They run a bench to bedside/bedside back to bench research program that includes work with mice, rats, pigs, and non-human primates.
    (He’s a super fast-talker, people . . . be sure to look at the video of this one if you want the full picture.) I’m letting him run through the basic intro slides, which are about things not that interesting to most of us — old approaches, acute interventions, like hypothermia.
    For those who don’t know, that means cooling the body of the injured person within hours of the injury; it seems to be very safe and fairly effective in changing almost half of the ASIA A patients to a better outcome. There’s a major study underway right now. Other strategies for acute injuries include riluzole, minocycline, neither of which seem to work as well as cooling . . . another one is cethrin, also in trials right now.
    On to regeneration: there are various helper cells: schwann cells, OECs, astrocytes, macrophages, genetically engineered cells like fibroblasts and schwann cells, stem cells including fetal, embryonic, adult, etc.
    Why Schwann Cells? They promote regeneration of axons, they produce growth factors, they myelinate axons, they restore conduction, they enter the cord in big numbers, they’re already in your body . . . right now there are 6 FDA approved clinical trials being run out of the Miami Project, including Schwann cell transplantation for subacutes.
    Wow, such a fast talker — I’m sitting here wishing he’d have chosen to talk only about CHRONIC injury intervention and done so at a reasonable pace.
    Boot camp for chronics, with a goal of getting people conditioned. It includes body weight supported training and then injection of Schwann cells.
    They’re building a $130 million hospital right next to the project . . . they’ve started a neuro-engineering department, led by Monica Perez.
    Talking about using Deep Brain Stimulation to target neuropathic pain. Done two patients, and both of them are getting relief. THAT’S BIG NEWS TO ME. Where can we learn more about this, please?
    He invites questions and communication! write to him at ddietrich@miami.edu
    Q: You have a lot of things planned and ongoing for acutes and subacutes. What drives an organization like yours to spend so much time and money and energy on acutes instead of chronics?
    A: If you look at those 25 trials I mentioned on that last slide, we’re looking at all kinds of things for chronics. (Names a few things)
    Q: (same person) no, no, no . . . we’re always told when we ask that things are being studied for chronics, it’s like, someone is doing a psychological study to find out how you are feeling! We want to get up.
    A: I hear you loud and clear. Keep in mind that we can learn from these studies. We can only do what the FDA permits, and that often does mean — as in the case of Schwann cells — they wanted us to do acutes only at first.

    Q: It’s very important to keep a balance, though. There’s a big imbalance in how much of your work is aimed at acutes v. chronics! There are no acutes in this room, are there? I’m not saying you shouldn’t do that work at all, but you might have a better balance between acutes and chronics.
    A: I think if you go into emergency rooms you’ll see plenty of acutes . . . Thank you very much.
    Q: About chronics getting Schwann cells & procedure vis a vis surgery & rehab
    A: We’re using technology developed in other trials to do the surgery, are adding more cells to the chronics as we demonstrate safety, and yes, for chronics there’s a very serious rehab to maximize return.
    Q: Are you collaborating with others across the planet?
    A: Yes.
    Q: How close are you to developing a cell that you think will work?
    A: Schwann cells could work (for a variety of reasons). I think we’re getting close. Some people are showing robust regeneration but it’s not leading to functional improvement. We’re working with StemCellsInc and Neurostem on their programs, because we’re going to need industry.
    Q: What’s the main mechanism you expect from Schwann cells?
    A: Remyelination, plus growth factors. Creating a more permissive environment by addressing inhibitory molecules . . .

    https://liveblogw2w15.wordpress.com
    Last edited by paolocipolla; 28 Sep 2015, 5:47 PM.
    In God we trust; all others bring data. - Edwards Deming

    Comment


      Is this progress?
      In God we trust; all others bring data. - Edwards Deming

      Comment


        Originally posted by paolocipolla View Post
        Is this progress?
        "I think if you go into emergency rooms you?ll see plenty of acutes . . . Thank you very much."
        Someone should have rolled up there and punched him in the marbles.

        Comment


          It seems like bad taste and in a way, cruel, for U2FP to invite guest speakers to come and present about acute therapies that are 100% irrelevant to the audience. Especially when most of the SCI audience can't comprehend that these acute therapies will not work on them.

          Comment


            Originally posted by #LHB# View Post
            "I think if you go into emergency rooms you?ll see plenty of acutes . . . Thank you very much."
            Someone should have rolled up there and punched him in the marbles.
            It takes balls to go to a conference of chronic injured SCI to present about acute only therapies. He shouldn't have accepted the opportunity to present.

            Comment


              I agree with Nowhere Man & #LBH# - bad taste and cruel but I think more important is the point Paolo was making - 4 years later and the exact same shit is be said. The argument from 2011 that goes 'we'll work on acute first, then move to chronic' just doesn't hold weight when exactly the same thing is being said 4 years later. Nevermind the fact that acute and chronic therapies are two different kettles of fish. I agree with Paolo; it's no progress at all. From the Kate's blog (which is excellent) the part where he says something along the lies of 'go to an ER and see plenty of acutes' - I wonder how this went down in the room?
              Grammy, I'd love to hear your thoughts on this (once you've recovered!)

              Comment


                It is not progress in a visible way for any chronic injuries. The somewhat sad reality is the research tends to focus on acute injuries. I see multiple factors influencing this. The belief by many researchers that that is where they can first open the door, the belief ( right or wrong ) that is has a better chance for success, the theory that neuroprotective interventions are best in the first days after injury, the FDA leans toward these thoughts and that so far that is where the funding has sought trials.
                To move the bar toward chronic injury will take dollars AND a larger voice than I have witnessed in 40 plus years. Even though Miami Project hasn't put a treatment out for chronic injuries I know from face to face meetings that Marc has no desire to be in a chair any more than anybody in this group.
                Why we gripe about the efforts of others is something I don't understand.

                Comment


                  To echo above, in Kate's write-up, Dr Dietrich does explain that the FDA wants it this way ... to concentrate on acutes first. His entire presentation was rubbish. His question and answer period was Donald-Trump-level-ass.

                  Whomever thought to invite the NIH rep, was completely on fleek! Maybe someone from the FDA next year.

                  A quote that interested me:

                  This from Gregoire - possible wireless with brain implant later on - but into monkey testing now:
                  "An injured monkey (lateral hemisection) after 5 days post with this technology can walk. Gregoire says that when he saw this he wept."

                  After reading more - stem cells are a pipe dream that is way off. Kudos to the researchers making it happen but there will have to be generations built on their base knowledge. We won't see this apply in our lifetime.

                  Just my opinion - but the Alfors stuff was rubbish. We've seen scams from Russia before and I think this is just more blow-hard BS from a corrupt country. Just my opinion though. The first part had warnings that it wasn't to be shared ... grandstander.

                  I can't want for video of Gregoire ... but nothing else stuck out for me. Another year of waiting. Kudos to the people that put this together year after year and for having enough hope for the rest of us to keep doing it.
                  Roses are red. Tacos are enjoyable. Don't blame immigrants, because you're unemployable.

                  T-11 Flaccid Paraplegic due to TM July 1985 @ age 12

                  Comment


                    Originally posted by lynnifer View Post
                    To echo above, in Kate's write-up, Dr Dietrich does explain that the FDA wants it this way ... to concentrate on acutes first. His entire presentation was rubbish. His question and answer period was Donald-Trump-level-ass.

                    Whomever thought to invite the NIH rep, was completely on fleek! Maybe someone from the FDA next year.

                    A quote that interested me:

                    This from Gregoire - possible wireless with brain implant later on - but into monkey testing now:
                    "An injured monkey (lateral hemisection) after 5 days post with this technology can walk. Gregoire says that when he saw this he wept."

                    After reading more - stem cells are a pipe dream that is way off. Kudos to the researchers making it happen but there will have to be generations built on their base knowledge. We won't see this apply in our lifetime.

                    Just my opinion - but the Alfors stuff was rubbish. We've seen scams from Russia before and I think this is just more blow-hard BS from a corrupt country. Just my opinion though. The first part had warnings that it wasn't to be shared ... grandstander.

                    I can't want for video of Gregoire ... but nothing else stuck out for me. Another year of waiting. Kudos to the people that put this together year after year and for having enough hope for the rest of us to keep doing it.
                    "Donald-Trump-level-ass" I think is a good definition. LIKE!

                    If you look carefully at Kate's Blog you will see that there was a presentation from the NIH and one from the FDA.

                    Then I think you are getting too excited from Courtine's work, could it be because he has a french accent? LOL!

                    I also agree about Ahlfors..
                    In God we trust; all others bring data. - Edwards Deming

                    Comment


                      Thanks Paolo re FDA .. I'll have to go back and read more thoroughly as I just skimmed it quickly this morning.

                      Cortine = french accent hotness that is certainly packing below the waist (oh gosh I'm so sorry for being rude ... not really, lol).

                      Paolo it's difficult to look at the five (now) people that have had the stim experience and not get excited or hopeful. What is your fear? That other biological attempts at regeneration will cease?

                      I was sorry that Jerry Silver didn't have an update ... I assume that is why he wasn't there this year.

                      Funny to read the old stuff from above in 2011 and see Dr Davies mentioned. He dropped off of the radar quite fast! I always found it funny that he wore a huge belt buckle like a real Texan ... and he left 'town' like a real cowboy with a bounty on his head. Wonder where he is and what he is doing now?

                      Eye on the Prize: https://www.youtube.com/watch?v=mp8w...WChvNfCJqOXct1
                      Last edited by lynnifer; 29 Sep 2015, 11:48 AM.
                      Roses are red. Tacos are enjoyable. Don't blame immigrants, because you're unemployable.

                      T-11 Flaccid Paraplegic due to TM July 1985 @ age 12

                      Comment


                        Originally posted by lynnifer View Post
                        Thanks Paolo re FDA .. I'll have to go back and read more thoroughly as I just skimmed it quickly this morning.

                        Cortine = french accent hotness that is certainly packing below the waist (oh gosh I'm so sorry for being rude ... not really, lol).

                        Paolo it's difficult to look at the five (now) people that have had the stim experience and not get excited or hopeful. What is your fear? That other biological attempts at regeneration will cease?

                        I was sorry that Jerry Silver didn't have an update ... I assume that is why he wasn't there this year.

                        Funny to read the old stuff from above in 2011 and see Dr Davies mentioned. He dropped off of the radar quite fast! I always found it funny that he wore a huge belt buckle like a real Texan ... and he left 'town' like a real cowboy with a bounty on his head. Wonder where he is and what he is doing now?

                        Eye on the Prize: https://www.youtube.com/watch?v=mp8w...WChvNfCJqOXct1
                        I have been following the epistim approach since well before it become a hot topic since I have a friend researcher who was involved in it. I am convinced that this approach will get nowhere.
                        Do you remember when the FES was a hot topic and people believed it would induce plasticity and also some regeneration?
                        I think epistim will follow a similar path while it is a more complex technology.
                        I don't want you to believe me, I want trials to go on and show if it can really benefit people or not.
                        I am sure it will not, so I see a lot of money wasted in a dead end direction, but at the same time I see that as a necessary step to move forward, sadly.
                        In God we trust; all others bring data. - Edwards Deming

                        Comment


                          Lynnifer and Paolo, I just returned home from W2W 2015. Somewhat disappointed in the lack of progress and same conversation from previous meetings with Dr Dietrich. His response as to why they focus on acute was "they go with what is funded". There were some other opinions on that. Lyn Jakeman of NIH seemed to disagree. She can be contacted directly with other questions. The reps from FDA that were in attendance didn't have much info on funding acute vs chronic, they were from the Patient Network group.

                          I hope you are wrong on Dr Ahlfors, if you were sitting in the room watching the video of his 4 patients it was difficult not to be hopeful. Yes, he is new in the public arena and may be a bit rough around the edges but from what I hear he has been working successfully with neural stem cells somewhat "underground". He and New World Labs are certainly what I will be closely watching after this symposium.

                          Comment


                            Originally posted by SharonD View Post
                            Lynnifer and Paolo, I just returned home from W2W 2015. Somewhat disappointed in the lack of progress and same conversation from previous meetings with Dr Dietrich. His response as to why they focus on acute was "they go with what is funded". There were some other opinions on that. Lyn Jakeman of NIH seemed to disagree. She can be contacted directly with other questions. The reps from FDA that were in attendance didn't have much info on funding acute vs chronic, they were from the Patient Network group.

                            I hope you are wrong on Dr Ahlfors, if you were sitting in the room watching the video of his 4 patients it was difficult not to be hopeful. Yes, he is new in the public arena and may be a bit rough around the edges but from what I hear he has been working successfully with neural stem cells somewhat "underground". He and New World Labs are certainly what I will be closely watching after this symposium.
                            Thanks for reporting Sharon.
                            I believe that to have a constant dialogue with the NIH and FDA is essential and that to have one person from the NIH and one from FDA at W2W was a great start (finally - and I hope it will not be just a start).

                            I too hope to be wrong about Ahlfors.
                            I don't have any particular info about his work, but his sicret attitude is not promising to me. He came here on CC and never answered a question about his research, animal studies etc. ...but asked for money
                            I have seen that happening several times in the last 10 years and not a single time it turned out to be something good for us.
                            If I were not skeptical I would be naive, while I understand some people get very excited about J.E. Ahlfors also because it seems there was nothing else to get excited about at W2W this year.
                            Sorry I forgot Courtine
                            In God we trust; all others bring data. - Edwards Deming

                            Comment


                              Some horses have been beaten for years. The e-stim goes way back to Petrofski and Nan Davis. Body stocking first then implanted electrodes at Wright State. The equipment has improved immensely. Wave forms and frequencies are more effective. Will it cure? NO. It might however end up a good adjunct therapy. Still a frustratingly long time.
                              Originally posted by paolocipolla View Post
                              I have been following the epistim approach since well before it become a hot topic since I have a friend researcher who was involved in it. I am convinced that this approach will get nowhere.
                              Do you remember when the FES was a hot topic and people believed it would induce plasticity and also some regeneration?
                              I think epistim will follow a similar path while it is a more complex technology.
                              I don't want you to believe me, I want trials to go on and show if it can really benefit people or not.
                              I am sure it will not, so I see a lot of money wasted in a dead end direction, but at the same time I see that as a necessary step to move forward, sadly.

                              Comment


                                Originally posted by lynnifer View Post
                                I was sorry that Jerry Silver didn't have an update ... I assume that is why he wasn't there this year.
                                No, Jerry wasn't invited to speak this year. I so wish we could have more speakers but there's simply not time to cram in any more speakers during the symposium. I think people that are attending and working with the scientists, funders, other foundations and government officials simply cannot handle any more of the load. They are exhausted after 2 jam packed days which I think all of the SCI participants will agree with. People can only handle just so much. If we had a larger active SCI population that could work the information effectively then an additional day could be added but the community is just too small to handle the extra work load it develops into.

                                Originally posted by paolocipolla View Post
                                I believe that to have a constant dialogue with the NIH and FDA is essential and that to have one person from the NIH and one from FDA at W2W was a great start (finally - and I hope it will not be just a start)...
                                Actually, the NIH, FDA, DOD, Sam Schmidt and Nielsen Foundation have all been at W2W giving presentations and engaged with the W2W participants over the past 10 years. It's not a new phenomena or first time appearance for any of them. Many of them send teams of people into the conference to help engage and work together. Not everyone working on cure or SCI projects come to this forum to report their activities to you. (You'll never tell us what you have the government in Italy doing for us but we sure do wonder about the ongoing silence every time you're asked).

                                Originally posted by Nowhere Man View Post
                                It seems like bad taste and in a way, cruel, for U2FP to invite guest speakers to come and present about acute therapies that are 100% irrelevant to the audience. Especially when most of the SCI audience can't comprehend that these acute therapies will not work on them.
                                U2FP is Unite 2 Fight Paralysis. There are more suffering the ravages of paralysis than just what you perceive as chronic mechanical SCIs. Ask people like Sharon, Lynnifer, Dennis, TBone, Sue, Bill, Amy, Roger... Acute therapy potentials are very relevant to their paralysis and they do know that... Their suffering is every bit as real as yours is.

                                Total complete B.S. Nowhere Man! It's not bad taste or cruel. ​The blog article missed a specific chronic point... (As Kate said, Dr. Dietrich speaks fast and covers a lot of ground quickly). People on this forum for years demanded that the Miami Project put together a chronic clinical trial. There's been dozen's of threads about it here on carecure. Miami Project came to present their stem cell research, ongoing clinical trials, new initiatives and announced the recruitment of their first new "chronic" trial. LINK (In fact, Paolo publicly demanded this 4 years ago and got exactly what he wanted from Miami Project). MP will have a new website up and running in a few weeks also. If it's in poor taste, or cruel, then perhaps it's best to take that discussion up with someone like Paolo. The way I see it, Dr. Dietrich gave him what he'd demanded. He won the CT for chronic humans getting MP Schwann cells. Hopefully he sees the progress now instead of whining about wasted money, dead end directions and nothing good happening for him. You may disagree with what he wanted or what he got, but the progress at MP has been presented to the paralysis community nonetheless.

                                Originally posted by paolocipolla View Post
                                Then if you consider an org like the Miami Project, for example, the situation it is worse than I could imagine. Prof. Dalton Dietrich confirmed me at W2W (after my public question – I hope a video will be available) that they are not working at all on chronic SCI. I think this is totally crazy as the Miami project was created by a person with chronic SCI essentially to cure chronic SCI, I believe. So if we want to make a cure happen for chronic SCI we need a revolution, we need to take the bull by the horns, we need to have 95% of SCI research focusing on chronic SCI, not acute.

                                I cure for chronic SCI seems very possible to me, but it will never happen if we study just acute SCI.
                                I am dicouraged by the fact that acute vs chronics has been dicussed many times before here on CC. Years are gone and no-thing has really changed.

                                Occupy the Miami Project!
                                http://www.youtube.com/watch?feature...v=FOzjkzwsU2M#!

                                Paolo
                                Originally posted by paolocipolla View Post
                                Is this progress?
                                You tell us.

                                Originally posted by c473s View Post
                                Why we gripe about the efforts of others is something I don't understand.
                                I suppose it depends on the effort.
                                Last edited by GRAMMY; 1 Oct 2015, 8:43 AM.
                                http://spinalcordresearchandadvocacy.wordpress.com/

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